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Knowing but not knowing: the experience of parents who knew about their baby’s heart defect before their baby was born Rempel, Gwendolyn R.


This study was designed to discover and describe the experience of parents who knew about their baby's congenital heart defect (CHD) antenatally. With advances in obstetrical ultrasound and fetal echocardiography, more parents are learning of their baby's congenital anomaly before their baby is born. Little is known, however, about the experience of the parents who receive information about their baby's CHD antenatally. Review of the literature and consideration of Kleinman's (1978)cultural system model revealed that the literature pertaining to antenatal diagnosis represents the perspectives of those in the professional sector. The experience of antenatal diagnosis of CHD from the parents' perspective has not been studied. Their explanatory models are essential if we are to plan and provide nursing care for this growing population. The qualitative method of phenomenology was employed to elicit the parents' explanatory model - to answer the question, What is the experience of parents of children with congenital heart defects who knew about their baby's congenital heart defect antenatally? Data collection occurred through in-depth interviews with 16 mothers and fathers of eight children whose CHD was diagnosed antenatally. Through a process of ongoing data collection and simultaneous data analysis the experience of these parents was constructed. Subsequent interviews were used to validate emergent themes. The parents' experience of knowing about their baby's heart defect antenatally seemed to best be understood and explained through the description of three phases. The first phase, Suspicion to Diagnosis, began when suspicion was raised regarding their baby's heart through an obstetrical ultrasound. The second phase, Diagnosis to Delivery, began when the presence of the suspected heart defect was confirmed by a fetal echocardiogram. The third phase, Birth to Relief, was when the baby was born and parents discovered what the heart defect meant for their child. Concepts central to understanding the experience are uncertainty, grieving and maternal tasks of pregnancy. The meaning of these concepts to parents' experience of antenatal diagnosis is examined. The implications for nursing are many. The study findings clearly emphasize nursing has an important role in providing support, education, and anticipatory guidance for parents as they face the uncertainties of their pregnancy and their baby's birth knowing, but not knowing about their baby's congenital heart defect.

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